TO TELL OR NOT TO TELL

Judy Foreman, Boston GlobeCHICAGO TRIBUNE

For Cornelia and Leonard Wheeler of Cambridge, Mass., 83 and 91, the moment of truth came last fall when Leonard's doctor asked them whether they wanted the news "straight or not." After 63 years of marriage, it took only a glance before both nodded. The doctor then gave them what has become one of the most dreaded diagnoses in medicine: Alzheimer's disease.

Leonard's reaction was enormous relief: "I felt I wasn't doing as well as I should or as I used to in the past," he said last week, and finally, he knew why.

In Carlsbad, N.M., on the other hand, when Donna Markle began forgetting things and getting depressed, her husband, George, a doctor, had her evaluated by doctor-friends, then kept her Alzheimer's diagnosis to himself. She died two years ago at age 70, never knowing why she had changed or why she was depressed.

With 4 million Americans now suffering from Alzheimer's and 14 million expected to get the disease by 2050, the issue of whether-and how-to tell early-stage Alzheimer's patients of their diagnosis has become an increasingly compelling one.

Some doctors and care-givers, such as George Markle, argue against telling on the grounds that the diagnosis can be too devastating for people already losing their ability to think clearly, that there is no good treatment and that, until autopsy, doctors cannot be 100 percent certain a patient has Alzheimer's, a progressive disease that usually strikes after 65 and is marked by severe memory loss.

But when does truth-telling become "truth-dumping"? Does the right to know mean patients lose the right not to know? Has the pendulum swung too far toward autonomy and away from what some call the "right kind of paternalism"?

Thirty years ago, it was a cancer diagnosis that patients most trembled to hear and doctors most feared to tell. Today, at least for older people, it often is Alzheimer's.

Some ethicists, among them George Annas, professor of health law at the Boston University Schools of Medicine and Public Health, believe that, for all the distress caused by the truth, "you have to have a medical system based on truth."

"Nobody wants bad news," he says. But not being told you have a terrible disease "does not change the fact that you have it and that you're the one who should be making the decisions." By not knowing, "Yes, you can avoid all that, but that's irresponsible, and it's part of our death-denying culture."

Rev. John Paris, a bioethicist and Jesuit priest at Boston College, on the other hand, believes "truth-telling with Alzheimer's is the most clinically sensitive issue in medicine."

In recent years, he says, there has been an "enormous emphasis on autonomy. But the pendulum has swung too far. The knee-jerk autonomy crowd believes the only value is autonomy, and the hell with Granny, it's her choice.

"I think to tell or not to tell depends on the patient and on the doctor's assessment of the patient. This is the `right kind' of paternalism."

In a pioneering effort begun four years ago at the Alzheimer's Association of Eastern Massachusetts, psychologist Paul Raia began therapy groups for people with early-stage Alzheimer's.

For years, people had assumed that even in early stages, patients might not be able to benefit from therapy and that the disease was too devastating to talk about.

But Raia discovered that patients feel an enormous sense of "hopefulness, just from the realization that they are not alone, that there are other people in this situation."

Markle, who acknowledged in a telephone interview that he withheld his wife's diagnosis over his daughter's objections, is utterly convinced he did the right thing.

"I put myself in her place, in the early stages. She would have committed suicide. She knew she wasn't the person she had been. She said, `I'm no good anymore. I ought to shoot myself.'

"I was paternalistic. But there was . . . no treatment. I felt that if I were in that situation and somebody told me . . . I'd have gone and shot myself."

Raia contends the notion that most people receiving an Alzheimer's diagnosis will commit suicide is "ludicrous."

"As a matter of fact, the opposite is true," says Raia, citing a study showing the suicide rate is actually less among Alzheimer's patients than among their age mates.

One of his patients, he adds, has watched his parents die of Alzheimer's and now is watching a twin brother in the final stages of it. Yet this man wakes up every morning determined to take one day at a time and feeling an "infectious enthusiasm for life."